Marie ([info]usafpa) wrote in [info]no_pity,
@ 2006-11-05 14:39:00
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Current mood: angry

Should severely disabled kids be kept small?
http://msnbc.msn.com/id/15517226/

6-year-old given hormones to stunt growth so parents can care for her

So what do you think of this? Me, I'm very angry. Not only is this child a human being and not a medical experiment or a toy, what do you say to a child if a cure for their disorder is discovered a few years from now? Whoops, sorry, just won't cut it.


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[info]bluhairedmonky
2006-11-05 07:55 pm UTC (link)
Just...oh my goodness. I am so enraged over this. I want to strangle those doctors.

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[info]orpheuskiss
2006-11-05 08:20 pm UTC (link)
wtf?!

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[info]jenskot
2006-11-05 08:30 pm UTC (link)
You know, this really bugs me... every time medical technology is (ab)used to solve what is essentially a social problem, it sets back acceptance back for important emerging medicine/technologies that much farther. >:(

I do think her parents are attempting to give her the best care with her disability, which they believe is to be cared for at home (unfortunately, probably true). However, even though the exacerbation of her disability has an organic cause (growing older), the biggest problems caused by the disability itself are with social behaviours, not medical (the hysterectomy is used to prevent her becoming more disruptive, not avoids uterine cancer, right?) As such, the most direct - and ethical - treatment should be to solve those problems by social assistance rather than medical treatment.
Honestly, if these parents had excellent care for their daughter, would they even think about using an indirect "palliative" such as growth-attenuation?

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[info]67threnody
2006-11-05 09:05 pm UTC (link)
Yeah, keep the kid small and easily controlled. It's much easier to do that than to provide in-home supports or respite services for the parents, or education for the child to learn certain behaviors that will make it easier for *her* and for the people taking care of her.

I can't imagine that it's an easy decision for the parents. But I don't think it should be a decision at all.

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[info]nolly
2006-11-06 04:40 am UTC (link)
I think the hysterectomy was at least partially to prevent puberty and menstruation, because they specifically mention menstruation as a potential source of problems. (Changing a bloody diaper is so much worse than a normal one?)

It's possible that the hormone treatments would also increase her cancer risk, but it wouldn't need to go if they weren't doing those!

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[info]beccaviola
2006-11-05 09:24 pm UTC (link)
It seems like their only concern is to limit her physical size, rather than to control her behaviour.

It seems ridiculous, really - not least because in the age of high-quality hoists and power-assist wheelchairs there's no reason for her parents to imagine that their little girl's size would ever be a factor in her ability to live at home.

I wouldn't say that the finding a cure thing would be a big factor, though...

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[info]lisy_babe
2006-11-05 09:51 pm UTC (link)
I guess it's slightly better than murdering her, which is the other disability related news item of the day.

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[info]_robot_heart_
2006-11-05 10:14 pm UTC (link)
I dunno, I tend to be from the "all eugenics suck equally" school. But I hadn't heard about that. Horrid!

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[info]ceci2176
2006-11-05 09:58 pm UTC (link)
*shakes head* This is scary shit too.

Now I feel even more like a poodle...a toy poodle. ;-þ

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[info]maccaj
2006-11-05 10:42 pm UTC (link)
I think it's horrible *period*, and "what if there's a cure" should never even enter into the discussion. There have been many well known, well publicized cases of non-verbal disabled people who were presumed unaware or mentally impaired due to their inability to communicate, who later went on to become writers (Christopher Nolan), artists (Dan Keplinger) and otherwise contributors to their families and society (countless).

Assuming that an inability to communicate is equal to an inability to think, understand, or experience emotion, and that such eugenic experiments are somehow *more* horrible "if there is a cure" than they would be otherwise, is repugnant to me.

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[info]ceci2176
2006-11-05 11:52 pm UTC (link)
Icon love! That movie is just fabulous. As is the sport. There's something very cool about getting pummeled by a bunch of quad guys. *nodnod*

Oh, and I agree.

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[info]usafpa
2006-11-06 12:14 am UTC (link)
I have to agree with you. The above was just the first thing that ran through my head when I saw it. This is pure evil.

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[info]ellehowe
2006-11-05 11:55 pm UTC (link)
im small with no hormones if my drs said we could keep u small id say no give me the hormone LOL

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[info]ellehowe
2006-11-05 11:56 pm UTC (link)
im small with no hormones if my drs said we could keep u small id say no give me the hormone LOL although the hormones havent made me grow much but im stronger in my bones and thats wat we need hugs ellen

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[info]ellehowe
2006-11-05 11:56 pm UTC (link)
im small with no hormones if my drs said we could keep u small id say no give me the hormone LOL although the hormones havent made me grow much but im stronger in my bones and thats wat we need hugs ellen

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[info]aleja
2006-11-06 02:30 am UTC (link)
I can't believe that I just read that. It's unbelievable (and somehow, not) and chilling and... I just haven't got words.

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[info]idareya
2006-11-06 03:38 am UTC (link)
Sick, scary, wrong, evil... and every other negative thing I can think of would never be enough.This is what comes of giving people like Peter Singer positions of any authority. We are indeed beginning descent on a slippery slope.

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[info]matt_rah
2006-11-06 05:25 am UTC (link)
As I said elsewhere, I for one can kind of see where the parents and docs are coming from on this one. Don't get me wrong, I share the general sentiment of horror and outrage in this community, but I don't think the parents are Nazis.

One thing that occurred to me, though, is that surely this particular girl's problems aren't the most severe ever known? What do other families in similar circumstances do? I guess the answer is that often they feel forced to institutionalize the kid, especially once puberty hits. But it still doesn't seem like much of an excuse to do something so radical.

Another thought: WE NEED MORE DISABLED DOCTORS (and nurses/nurse practicioners, and other influential medical professionals). I don't think all those British and Dutch doctors would be talking so blithely about euthanasia if they were disabled. (I could be wrong, I don't know.)

Finally, does anyone else find the Netherlands really fucking scary? I've read some disturbing reports of pressure put on old folks, also, to "voluntarily end their suffering" and such. It really may be an example of ethical slippery slope situations gone horribly, horribly awry.

Matt

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This is Nightengale, by the way
(Anonymous)
2006-11-07 01:57 am UTC (link)
Re more disabled doctors - We're trying! But the same people who want to kill us, for some odd reason, don't quite see us as peers either. . .

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[info]lyricanjl
2006-11-06 05:27 am UTC (link)
Oh, my god. Is she a child or a houseplant? Anyone doing that to a so-called "normal" child would be locked up for abuse. She should have had an advocate. What doctors agreed to that?

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[info]laurliz1186
2006-11-06 07:25 pm UTC (link)
Horrid, absolutely horrid and appalling.

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I don't see the point.
[info]call_me_lovey
2006-11-07 02:36 pm UTC (link)
I know.
This child's problems aren't the most severe in the world, there is always somebody worse off. There might have been something up w/ her parents, too.

There are still high-quality electric hoists. I have one. Why not just get one [& a portable one for back-up]teach her ways to control her behaviour, herself etc.? Anything is better than doing that.
If she needed support, she would have had to get it at some point. Stopping her increasing in size wouldn't make a lot of if any difference, nor would it control her behaviour. I don't see the point.

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(Anonymous)
2006-11-08 05:35 am UTC (link)
That is insanity! I can't believe I'm actually reading this. The little girl's parents are majorly farked up. I was dx'd with Growth Hormone Deficiency as a kid, and took hormones to reach my full potential adult height. But these parents WANT to stunt their daughter's growth just so it will be easier for THEM?! What the... I'm dumbfounded, and really angry.

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Should severely disabled kids be kept small?
(Anonymous)
2007-01-02 08:15 am UTC (link)
The heroine of this discussion is our daughter Ashley. If you are interested in the full story about the "Ashley Treatment" see: http://ashleytreatment.spaces.live.com/blog/ and for Ashley's photos see: http://ashleytreatment.spaces.live.com/photos/

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Re: Should severely disabled kids be kept small?
(Anonymous)
2007-01-05 07:29 pm UTC (link)
I would like to say this is leagally wrong, i worked with handycap since i was 14 and now i am 49. i was a care giver and i have to say it's a catch 22! how will you know if this person will develope or who's to say they will not what got me hooked on care i took care of alot of people and i injured my back on an over wieght person which involved surgery i agree on surgery, only because they can recieve better care. but only if you know there is no possible way that this person will not develope i worked with comminity health these people can be crual i asked them why do you let severly handicapped people to procreat i was told its job security!! fell free to contact me at sexybikerwomen@yahoo.com thank you for info AKA Bianca hintz

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